TSH 7.28, then 5.37, FT4 at low end - borderline or not?

Hi,

I've had multiple readings taken over the course of two years, first test was in 2010 where TSH was highest. I've had a constant battle with the GPs to get to the bottom of what is wrong with me. I'm tired, exhausted, low, cold hands, dizzy with the fogginess in my head! The list of symptoms goes on...

I've been prescribed a low dose of levothyroxine just this week - it has taken me a long time to convince a GP to give me a trial run on it (in my experience they just keep trying to palm you off with Prozac and hope you'll go away..)

One GP says no thyroid problem exists, another thinks I am borderline or sub-clinical - Dr Peatfield (the author of the wonderful book 'Your Thyroid and How To Keep It Healthy) cites any TSH reading above 2.5 as a cause for concern - in the UK this doesn't seem to be the case?

My questions are these - have any of you also experienced mixed messages? 'Normal' readings, 'borderline readings' - thoughts can be a powerful thing, I wouldn't want to have convinced myself that I am hypothyroid - but the symptoms alone and some of the dodgy TSH readings seem to point this way, FT4 also at the low end? My trial on the meds I hope will give me some answers.

To share with you, my readings and lab reference ranges in brackets...

TSH 7.28 (0.35 - 6.00 U )

TSH 5.37 (0.35 - 6.00 U )

TSH 5.3 (0.40 - 5.00 U) FT4 13.6 ( 10 - 23 )

TSH 4.47 (0.40 - 5.00 U) FT4 11.8 (10 - 23 )

TSH 4.68 (0.40 - 5.00 U) FT4 15.5 (10 - 23 ) FT3 5.2 (3.5 - 6.5)

10 Replies

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  • Hi

    In my non medical opinion, it is good that you have finally been prescribed levothyroxine! :-) How much have they started you on? For some people, the make of levothyroxine can make a difference and it is better for them to always have the same one.

    A lot of people do not feel well until their TSH is towards the bottom of the range - or even lower and their T4 is towards the top.

    Please make sure that you are taking your levo with water only, at least an hour before food and well away from any other supplements.

    We have lots of information on our website:

    thyroiduk.org.uk/tuk/diagno...

    We also have a membership:

    thyroiduk.org.uk/tuk/member...

    Louise

    x

  • Thank you Louise I will certainly join!

    They have started me on 25mg, so far I don't feel different - but I guess it will take a couple of weeks to tell, if this dosage even makes a difference.

    Emma

  • Unfortunately doctors are untrained in the clinical symptoms and are told only to prescribe according to the TSH. 25 mcg is an extremely small dose. 50 would have a been a better dose but because your GP is reluctant your dose should be increased in about 4 weeks. Most times a low dose can have the opposite effect as it can make your metabolism even slower.

    You are right. They are more willing to prescribe anti-D's rather than proper meds.

    I hope you feel better soon.

  • Can I suggest you have a Free T3 test. TSH T4 and Free T3 were always together used to diagnose thyroid discease. it is only because of cut backs that they rarely are not. I My endo and I know I always need my FT3 tested. A lot of NHS labs will not do it ,so GP`s etc. have given up asking. If you do not mind paying can I suggest you go to the TUK site, Blue horizon and have the intermediate test. Quote TUK 10 for a £ 10 reduction, costs about £60, same test at a private hospital about £200. They are the Lab TDL , which is the one widely used and some doctors will only use it. For this reason any doctor will recognise the results. It is very easy and all done by you with a quick reply by PC.You are not borderline and need treatment according to how you feel and how your bloods are. If this does not work ask to see an endo, but, take care to investigate who you see yourself. like every thing there are good and bad doctors, do not just accept GP`s recommendation for referral.You may not even need prozac if your thyroid is sorted. Good Physcs know this but often does not work in reverse. Good luck, this is one of the occasions you might need to fight.

    Jackie

  • An awful lot of people on here are in the same boat as you, even though they are showing all the classic signs of thyroid problems their docs will not even consider treatment until their TSH reaches the magic number 10, which to me is absolutely criminal. With the way you are discribing your symptoms, which are classic thyroid, I dont think you are imagining or trying to convince yourself of having an underactive thyroid.

    It looks like you have a battle on your hands, as many do on here, to try and educate your doc into not treating by TSH results alone (before blood tests where available docs used to diagnoise on symptoms alone) but by listening to you and taking into account your symptoms. This may seems a huge task but many of us have had to overcome this and with a lot of success and will help and advise you if and when necessary - you only have to ask.

    Good luck and dont be afraid to ask as many questions as you feel you need to - thats what this site is all about, to support, help and advice.

    Moggie x

  • Just wondering if you have had your thyroid antibodies tested? Raised antibodies would be another indication that you need thyroxine and might help to convince your GP into continuing the trial and hopefully upping the dose. xx

  • In my experience, the GP wouldn't treat my TSH of 5, but as soon as I saw the endocrinologist, he immediately treated me based on my symptoms. I did see him privately and would not have got an NHS referral though. My advice is to get to see an endocrinologist who will investigate you properly and treat you based on your symptoms.

  • The point is, how do you feel? You are ill. Doctors should treat a person not a laboratory test. In may area the upper number for the TSH is 4.2 I think. In Germany I believe it is 2. In the United States it is recommended that it be 3. The blood test does not correlate with symptoms or how bad the actual illness is, symptoms do. You can have a very high TSH and just feel a bit tired. You can feel like death and it is hardly raised at all. The average GP hasn't a clue. Ask to be referred to an endocrincologist (not one that specialises in diabetes). The blood test is an unreliable means of testing for hypothyroidism, nor should it be used to monitor treatment. You could try the 24 hour urine test from Genova. Although my blood test test my T4 and T3 were normal (TSH 5.5), the urine test said T4 was borderline and T3, the active hormone, was low. So much for their blood test! You buy the test through Thyroid UK.

  • Thank you all this is really eye opening. It seems that the whole profession is in conflict over the subject, the analysis of blood test levels, the symptoms, the different lab test ranges! It's pretty challenging to fight with, especially when you're feeling so ill - a battle is the last thing we need!

    Going private seems to be one way to supress some of these frustrations, money allowing. But getting a referral from the GP would likely be another time consuming battle.

    I do not want to be defeated!

    Emma

  • Interestingly I was ill with anxiety and all the usual feelings of weakness, depression, increased weight etc etc for many years. I was finally prescribed levo when I intermittently lost part ofmy vision, explained how I'd been feeling for some time again and lo and behold the thyroid test was done and my TSH was 8. I still never felt well and it wasn't until I saw Dr P and took all my blood tests for the last 19 years which I would never normally understand and saw that in all that time my FT4 was bottom of range or even lower. How terrible that no one tells us or treats us. I had been like that for so long, my adrenal glands were exhausted and I couldn't convert anything which is a different story.

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